What The Heck ?!?!?

[Stephanie78]

So, the week of Christmas we had incredible news from Johns visit. Remission was the word given. Then today I get a call from his doctor (I guess they had other tests out still) and were informed that the RTX was wearing off and the "CELLS" are coming back! WHAT THE HECK?!?!? So now he has to go back to UNC on Friday for round 1 of his 2 part RTX treatment. Really?!?! Can you say DISCOURAGED?? I hated calling John and telling him. I'm so over this crap!

[Brooke]

When was the last time he had Rituxan? My doc wanted me to have more than one round of Rituxan, so I had 4 infusions in April 2010 and once my BCells came back, I did anther round in April 2011. So I don't think it necesarrily means he is flaring, they probably think another round of infusions will be beneficial.
How many rounds of Rituxan has he had?

[Stephanie78]

In July he had his first treatment, August was his second. He had 2 treatments of Cytoxan to start off with in June (as well as oral Cytoxan for 3 months). He had 7 Plasma Exchanges in August.
His ANCA has been negative the past 2 visits to the doctor (so since November).
His doctor stated 2 weeks ago that he "may" have another round to be on the safe side BUT at that time the BCells were no where mentioned.
It's just so frustrating.... The part that scares me is that he had a "cold" begin a week ago (which is sinus issues is what started his flare last time) . Ugh!

[Sangye]

Stephanie, it's very common to need a second rtx infusion to maintain remission. Some of us have to get them regularly to stay in remission.

It should continue to work for 6-12 months though. If it wears off faster he may have to switch to the 4-infusion protocol (ie, 1 infusion a week for 4 weeks). I did the 2 infusion protocol once last year and it didn't work. I had to do my usual 4-infusion protocol within a couple months.

[pberggren1]

I'm curious to know exactly what level his B cells are at.

[Stephanie78]

Sangye, that definitley makes me feel better to know that it is "normal" for a WG patient to have more infusions in remission.

Phil, I'm curious about that as well. Funny how you realize the questions you should have asked AFTER you have the conversation. John has two main doctors (Falk and Kidd). In Falks office there are numerous other doctors who John deals with once in a while. Dr McGregor is a colleague of Dr Falks (Who John has seen before). She is the one who called to inform us of the results and the need to come back for RTX. I then emailed Dr. Kidd because I was quite confused. (Also for a referral for a hotel so that we could get the deeply discounted price for Hospital Patients). He said that there were "signs" of B Cells coming back. He also said that Johns Creatine levels were continuing to go up. He had an issue with this in September and they put him in the hospital for fear he had an infection of some sort. They finally decided it was because he was not eatting/drinking like he should (He was still losing weight). However now he has gained quite a bit of his weight back (about half of what he lost) and the numbers are still "slowly" going up. He said they will possibly do a Ultrasound OR MRI of his kidneys on Friday as well. Also mentioned that he "may" have to undergo another kidney biopsy.

He says he feels fine. He did say he has felt more worn out for the past week or so then before. We will have the chance to talk with Dr. Falk on Friday so we will have a chance to ask more questions.

Dr. Kidd called back later (after I posted the original post) and said it is more of a "PROACTIVE" then "REACTIVE" so that makes me feel better.

[Al]

Stephanie, as annoying as this is, I wouldn't worry about this too much. "Remission" is a curious term for weggies. It means, mostly, that inflammation is not currently active, not that we need never to worry about being sick again. We are all aware that lifelong vigilance is where we are at; we go about our business as we can and as we enjoy, knowing that things can always change. But, then, how is that different from what everyone goes through?

Among other things, B cells produce antibodies, including ANCA. The fact that the B cells are returning just means that there is more possibility of ANCA returning as well, not that they are actually present. And, even if ANCA are at large, it does not mean that there is active inflammation. Finally, there can be some inflammation that could have nothing to do with the ANCA. As for the rising creatinine, many things can account for this--not just vasculitis. It is wise to be suspicious of any infection, including a minor cold. But neither are they an automatic cause for concern.

Finally, it is good that there are RTX protocols that will get things back on track. I realize that the drive is a nuisance for you, and we all get tired of dealing with the white jacket folks, even if they are legitimate gurus. But you are doing an amazing job, and we are proud of both of you.

Al

[Stephanie78]

I love replies that make me feel more at ease, thanks Al.

I guess it just feels like another blow hearing "he needs another round of RTX". Keep in mind this was his first flare and it kinda turned our lives upside down (as I'm sure it has with everyone who has been dx'd and their families). I understand that his doctor has said that it should never be as bad as it was this time since they have a dx and know how to treat it, but until I live that part myself I'm not sure I can feel the assurance that it won't (make sense??)

The upside to this is that John and I have had all this "alone" time together. We will be leaving for UNC when I get off work tonight and stay in a hotel so that we don't have to get up so early for the drive. Downside to this is, that all of our alone time over the past 8 months has been in a hospital room OR the car on our way there or back home. PLUS we have to leave our two kids with my parents (which I'm so grateful for). Zach (15) has a better understanding. Kimberlee (8) doesn't. I've never minded the drive for a good reason. It is sometimes annoying that we drive 5.5 hours round trip for a 20 minute dr appt, but driving it so that he can get the proper care has never been an issue.

Plus side to it all, my best friend just moved to Raleigh (10 minutes from UNC) so we will get to visit and have dinner with her tonight. YAY!

[annekat]

I'm so glad this forum is here to set your mind at ease and provide such good information. I hope you two get to enjoy some "alone" time in the near future, that is NOT related to WG or any other medical issue but strictly for pleasure.

Anne

[delorisdoe]

it took me more than 2 years for remission.